PBC Symptoms and dealing with extreme fatigue

Posted by pjkb1health @pjkb1health, Nov 4, 2019

from pjkb1
How do you deal with fatigue and other symptoms from PBC? Does anyone else have this? It is causing me great difficulty in dealing with daily life, which is far from normal. Depression has set in. Can anyone help?

Hello @pjkb1health — Welcome to Connect. There is another active discussion for Primary Biliary Cholangitis (PBC) where your question will receive more visibility and you can meet other members with similar symptoms and learn what helps them. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion:

> Groups > Autoimmune Diseases > Primary Biliary Cholangitis stage 2
https://connect.mayoclinic.org/discussion/primary-biliary-cholangitis-stage-2/

I'm glad you found Connect and want to let you know you are not alone and will find help from other members who share your symptoms. Have you discussed your symptoms and feelings with your doctor to see if they have any recommendations to help with the fatigue and depression?

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@pjkb1health, Welcome. I am a liver/kidney recipient. I experienced severe itching and fatigue before my transplant. They are among the common symptoms that almost every liver patient experiences. Here is a discussion> Groups>Transplants>Liver disease itching where you can meet others who have shared about itching. You are not alone.
https://connect.mayoclinic.org/discussion/liver-disease-itching/
Are you being treated by a gastroenterologist (GI)? What help, if any, has your doctor offered?

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@rosemarya

@pjkb1health, Welcome. I am a liver/kidney recipient. I experienced severe itching and fatigue before my transplant. They are among the common symptoms that almost every liver patient experiences. Here is a discussion> Groups>Transplants>Liver disease itching where you can meet others who have shared about itching. You are not alone.
https://connect.mayoclinic.org/discussion/liver-disease-itching/
Are you being treated by a gastroenterologist (GI)? What help, if any, has your doctor offered?

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I have PBC. The fatigue is severe and changed my life. I am managing the itching. I see a hepatologist who checks my liver function blood tests every 6 months or so. I have responded well to Ursodiol which I take daily. However My life is not normal,

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pjkb, I came down with Lyme Disease a year and a half ago. This has been the hardest illness I have had in my Life. StageIV colon cancer was easier! Besides the other symptoms that come with diease the fatigue was the worst! All my 73 years I have athletic, full of energy, go the extra mile when others would quit and then I lost all that!
Talking to myself and trying to understand how i need to continue to carry on my Life was diffucult. I was to the point of ending it all! That's when I found Mayo Connect. So many people reached out and lent advice and a hand. It made me think how valuable Life is and to have so many people reach out to me so much! They send energy and hope to you that you can feel!
So to answer your question I and my doctor have come to the decision to break it down in small segments. For the fatigue the best thing to do is to build your schedule around a rest time everyday. No matter where I am I find a Special Place within me and take a 45 min to hour and a half nap. It has made me enjoy Life once again.
Also, on a suggestion from my doctor I found a Silver Sneakers Yoga class twice a week. For one hour those two days I realease everything and enjoy life. It really helps.
Sundance(RB)

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@pjkb1health

I have PBC. The fatigue is severe and changed my life. I am managing the itching. I see a hepatologist who checks my liver function blood tests every 6 months or so. I have responded well to Ursodiol which I take daily. However My life is not normal,

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Tell me more of your illness before transplant please

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@pjkb1health Have you been able to find any help with fatigue? It can really mess up your life, can’t it! Have you been able to talk with your doctor about the depression? Too many questions, I’m sorry. Let me know how you’re doing, https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/physical-activity-as-medicine/. I found this article that talks about fatigue and exercise. I know it’s focused on cancer patients, but the info helps all of us

Liked by lioness

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@shawnvidali56

Tell me more of your illness before transplant please

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I have not had a transplant. I have many symptoms of PBC, but the fatigue is the worst.

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@becsbuddy

@pjkb1health Have you been able to find any help with fatigue? It can really mess up your life, can’t it! Have you been able to talk with your doctor about the depression? Too many questions, I’m sorry. Let me know how you’re doing, https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/physical-activity-as-medicine/. I found this article that talks about fatigue and exercise. I know it’s focused on cancer patients, but the info helps all of us

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Thank you, Becky. I have not had any help yet with the fatigue. I have discussed symptoms with my pcp, and I have had recent blood tests, and will have some scans. We’ll see, after the results. I am told exercise may help, but extremely difficult with the various issues and fatigue. Thank you for your input.

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@pjkb1health

I have not had a transplant. I have many symptoms of PBC, but the fatigue is the worst.

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@pjkb1health Good morning from Calif. Early here but I wanted to let you know what I did for my fatigue . As sundance said find some chair exercise or use your silver sneaker to do water aerobics but some kind of exercise is so beneficial. When I have fatigue I push myself to do my chair exercise if you cant find a group there are You tube chair exercise or yoga or Tai Chi . One thing I have found that helps me get my mojo up is Ginseng capsules. usually just one will get me going enough I can exercise . Take a nap when your tired don't fight it . I hope you will find something to help you of course talk it over with you Dr. especially the medicine it is all naturel . Best wishes let us know how you are doing

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@pjkb1health

Thank you, Becky. I have not had any help yet with the fatigue. I have discussed symptoms with my pcp, and I have had recent blood tests, and will have some scans. We’ll see, after the results. I am told exercise may help, but extremely difficult with the various issues and fatigue. Thank you for your input.

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@pjkb1health, I am familiar with fatigue caused by liver disease. I had PSC (Primary Sclerosing Cholangitis) which also affects the bile ducts.
I also was told that exercise might help, and in the beginning I used to walk with a couple of fellow teachers after school. We either walked on the cross country course or did laps in the gym. We all agreed that we needed each other for motivation. The added benefit of conversation, made this a fun time for us.
Do you have anyone to partner with for any kind of walking or activity? It does not need to be anything elaborate – there is benefit to a short walk around the block, or around the house at regular intervals during the day.

Please check with your doctor before you take any over the counter medication or supplement. You don't want to do anything to add any stress to your liver.
Is your PCP working with someone who is experienced with liver diseases? My PCP referred me to a GI(gastroenterologist) who consulted with a liver specialist about my treatment for my liver disease.

I would like to invite you to this Primary Biliary Cholangitis and Autoimmune Hepatitis Discussion.
https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/
I send my thoughts as you await the test results.

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what is PBC?

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@khali

what is PBC?

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Good Morning, @khali. I notice that you have recently joined Mayo Connect , so please accept my welcome to the community. I have some familiarity with liver disease due to my own experience as a transplant recipient due to liver disease. When my PCP (primary care doctor) saw abnormal liver function lab results during a routine blood lab test, he referred me to a GI (gastroenterologist) who once suspected me to have PBC. I was eventually diagnosed with a different liver disease thru more testing.

PBC is Primary Biliary Cholangitis, previously called Primary Biliary Cirrhosis. It is considered a chronic autoimmune disease in which the bile ducts in your liver are slowly destroyed.
It's not clear what causes primary biliary cholangitis. Researchers think a combination of genetic and environmental factors. It develops slowly. Medication can slow liver damage and if treatment begins early it can help prevent some specific complications. It is important to work closely with your doctor if you have been diagnosed with PBC.

If you want to read more – click this link
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
Khali, are you experiencing any abnormal liver blood labs? How can I help you?

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